HELP!!!!!!

[Bajanne]

I thought I had more time!!!!!!
I went today to see the nephrologist.  TWO BIG PROBLEMS.
1. Neither the nephrologist or the nurse in the hemodialysis unit are happy with my new fistula.  They are not hearing the sound they should hear.  So I will probably have to go back over to St.Thomas to get it checked.
2. My kidney function has deteriorated and in the morning they will give me that catheter thing so I start dialysis right away. I was hoping I would have had more time to prepare myself spiritually, emotionally, physically, everythingally!
PLEASE, TELL ME ALL THE THINGS I SHOULD DO NOW, AND ALL THE THINGS I SHOULD BE AWARE OF, ETC. ETC., ETC...........

[LifeOnHold]

First of all,

DON'T PANIC! 

If the catheter is going in your neck, you might be able to have full anesthesia if your potassium level is ok-- otherwise, you'll get some lidocaine in your neck to numb the area for insertion. (And I won't lie, it's gonna hurt!  But it only takes a few minutes and you can probably get some pain meds afterward.) Actually, dialysis through the catheter is painless.  There will be a bandage over the catheter, which will be changed at dialysis-- you can change your own bandage at home, ask for some gauze and tape at dialysis.  You may or may not be allowed to shower while you have the catheter.  Remember to tape the ports to your chest, otherwise the ports will swing around and rip your skin where they exit your neck.

Your first dialysis session probably will be shorter than normal-- mine was only 2 and a half hours.  You might have to stay overnight in hospital for observation-- that's what I had to do.  Your first treatment won't be very aggressive, since there's no way of knowing how much fluid/toxins you really have.  If you feel at all 'funny', TELL THE NURSE so that you don't 'crash'-- your blood pressure may drop quickly and lead to passing out.

A social worker may come to your chair with a big stack of forms to be signed-- if you don't feel up to it, tell her/him that you'd like to read everything and sign it when you're more alert, maybe before your next treatment.  The dietician will also probably visit with you with tons of info-- ask if you can take it home and read it.  (This aggravated me on my first in-center dialysis-- I was barraged with papers and forms and couldn't pay attention to any of it because I was terrified!  Everything they said to me that day had to be repeated because I couldn't remember anything.)

You might feel ill during your treatment, so it's good to have something to vomit in-- most units have large styrofoam cups for this purpose.  It's also a good idea to visit the bathroom before your treatment, since it's a big hassle to be disconnected to use it during your treatment, and whatever time you spend in the bathroom is added to your treatment.

After dalysis, you'll probably feel very tired and hungry.  Even though you won't feel like it, you should have something to eat after dialysis, because dialysis removes large amounts of protein from your blood.  After you eat, you'll probably want to take a nap.  When you wake up, you'll feel better.  The first few months of dialysis are very physically taxing, and it may be a while before you can do everything you want to do after your treatment.

Tell us how your first treatment goes... good luck! 

[Epoman]

I thought I had more time!!!!!!
I went today to see the nephrologist.  TWO BIG PROBLEMS.
1. Neither the nephrologist or the nurse in the hemodialysis unit are happy with my new fistula.  They are not hearing the sound they should hear.  So I will probably have to go back over to St.Thomas to get it checked.
2. My kidney function has deteriorated and in the morning they will give me that catheter thing so I start dialysis right away. I was hoping I would have had more time to prepare myself spiritually, emotionally, physically, everythingally!
PLEASE, TELL ME ALL THE THINGS I SHOULD DO NOW, AND ALL THE THINGS I SHOULD BE AWARE OF, ETC. ETC., ETC...........

Sorry to hear your situation has progressed so quickly. First your fistula MAY be clotted and that sometimes happens when it is brand new. They can fix it don't worry. Or it may be fine and they reason they can't hear it is because it is too small.

As for the catheter make sure they put it in your chest not your neck. Not that there is a difference in the feeling but if it's sticking out of your neck your blouse or shirt won't cover it and people WILL stare. If it is in your chest either left or right side it will be hidden from others view.

When they insert the catheter your chest will be very sore and you it will be painful to move around for a little while. I have had 2 catheter and the first was painful but the pain goes away soon. When I had my second catheter I had no pain afterward. So maybe it just depends how skillful the doctor is. Once they insert the catheter the good news is dialysis will be painless while they hook you up, unlike when they insert needles.

On your first dialysis session you may get a headache, you may feel nauseous, If your levels are high enough your body might be shocked and you may pass out. I know I did, but my levels were VERY VERY high. My body was FULL of toxins and my body was shocked that is was being cleaned.
But don't worry your first session will be fine and you WILL notice a difference in your overall feeling the next day and most likely you will just have a small headache or maybe none at all.

You will have the catheter in for a few months or longer most likely while your fistula matures. That is why you need to be exercising that arm by squeezing a ball non-stop. The catheter can last you a very long time. I have seen people with a chest catheter for over a year. The trick is to keep it DRY and CLEAN. Do not get it wet in the shower. But the doctor will tell you all that.

If while you are on dialysis you start feeling nauseous or start cramping tell the nurse right away to stop the "UF" (Ultra Filtration) that means that they will just being cleaning your blood instead of cleaning and removing excess fluids. If that does not make you feel better in a few moments tell them to give you saline. Don't ask them TELL them. It's your body and only you know how you really feel. Start off with 100cc and go up from there. You will start feeling better right away. If you do cramp it will most likely be in your legs, a little trick is too lay your legs straight and have the nurse or tech push you toes/foot toward your body and hold it there. Again be polite but firm in your requests.

Getting back to your fistula they may need to do an angiogram or ultrasound to see if is clotted. If it is clotted they will inject medicine in it to "try" to declot it. Then they may do angioplasty at the site where it clotted to open it up to prevent future clotting. I had angioplasty done on me and there is little if no pain.

Angioplasty is where they stick a needle in your arm and a guide wire that has a tiny little balloon at the end of it. That will increase the size of the vein to help prevent future clotting episodes.

You will do fine and everything will be alright. Be strong and brave. I know it is hard and a million things are racing through your mind but we all go through the same thing. It sucks yeah, but you will get through it.

Please let us know how everything went. in a new post entitled "My first dialysis session"  By you telling us your story you will help future visitors to this site. Who are scared like you.

Good luck. We will be here for you.

[Bajanne]

I had my catheter put in yesterday.  It is still a bit sore.  There is something about myself that I did not tell you guys. That is, that I have faced life-threatening illness before.  I am a breast-cancer survivor (12 years )  So I had a very strange experience.  My mastectomy was on my right side, which became my 'bad' side.  I didn't use it for blood pressure or blood taking.  The fistula was  put in my 'good' arm which then became my bad side.  Now they had to use the right side for this procedure.  When the doctor was swabbing the area, I had a most unpleasant and queer feeling.  It think it was to do with my nerve endings. I don't ever rub that part of my body as it is very sensitive.  Today, there is a slight pain (the painkiller was making me feel more ill) and that strange nervy feeling in the area.  Otherwise I am okay.
I told the doctor not to put it too high.  I didn't want to be the Bride of Frankenstein to my students.

[Epoman]

I had my catheter put in yesterday.  It is still a bit sore.  There is something about myself that I did not tell you guys. That is, that I have faced life-threatening illness before.  I am a breast-cancer survivor (12 years )  So I had a very strange experience.  My mastectomy was on my right side, which became my 'bad' side.  I didn't use it for blood pressure or blood taking.  The fistula was  put in my 'good' arm which then became my bad side.  Now they had to use the right side for this procedure.  When the doctor was swabbing the area, I had a most unpleasant and queer feeling.  It think it was to do with my nerve endings. I don't ever rub that part of my body as it is very sensitive.  Today, there is a slight pain (the painkiller was making me feel more ill) and that strange nervy feeling in the area.  Otherwise I am okay.
I told the doctor not to put it too high.  I didn't want to be the Bride of Frankenstein to my students.

I too had Cancer (not as bad as yours though) I had thyroid cancer and I had to have my thyroids removed. I was lucky I guess because the doctors had no idea I had Cancer. They had went in to take my Para-Thyroids. And when they did they found lumps on my thyroid. So they cut one side of my thyroid off and tested it and it was cancerous. So they went in a second time to remove the other side. And because they went in the second time the doctor cut my left vocal cord (the more they go in your neck the more likely you will have damaged cords). So it is hard for me to talk.

I am glad you got that over with, now it's time to exercise that fistula. By the way what happened with the fistula? Is it ok?  Was it clotted?

[Bajanne]

Since the surgery was done in another island - St.Thomas, American Virgin Island, I have to wait until Monday to let the surgeon fix it.
It means that my first dialysis sessions will be totally contrary to schedule.  I have to go in tomorrow morning at 7.00 a.m. for the first session which they tell me will last about 3 hours.
Then Friday I will go at 12.00 noon for my regular session.  Monday I will be in St.thomas so I will have to be dialysed on Tuesday since I wouldn't be able to get back in time.  Then I will be dialysed on Wednesday as well since this will be the regular session.
What further advice do you have for me since on two occasions I will be dialysed two days back to back?
By the way, I cut and pasted bits of advice from you and LifeOnHold.  I printed them out and am taking them with me so I don't forget in the morning  when the enormity of the whole things overcomes me!
Many thanks to you and LifeOnHold.
Pardon me if this sounds too egotistical, but since this message board was started in August which is the month I was finally diagnosed, my feeling is that this board was specially put here for my benefit.

[Epoman]

Since the surgery was done in another island - St.Thomas, American Virgin Island, I have to wait until Monday to let the surgeon fix it.
It means that my first dialysis sessions will be totally contrary to schedule.  I have to go in tomorrow morning at 7.00 a.m. for the first session which they tell me will last about 3 hours.
Then Friday I will go at 12.00 noon for my regular session.  Monday I will be in St.thomas so I will have to be dialysed on Tuesday since I wouldn't be able to get back in time.  Then I will be dialysed on Wednesday as well since this will be the regular session.
What further advice do you have for me since on two occasions I will be dialysed two days back to back?
By the way, I cut and pasted bits of advice from you and LifeOnHold.  I printed them out and am taking them with me so I don't forget in the morning  when the enormity of the whole things overcomes me!
Many thanks to you and LifeOnHold.
Pardon me if this sounds too egotistical, but since this message board was started in August which is the month I was finally diagnosed, my feeling is that this board was specially put here for my benefit.

Pardon me if this sounds too egotistical, but since this message board was started in August which is the month I was finally diagnosed, my feeling is that this board was specially put here for my benefit.

Not at all, this site is here for you! and others like you and who knows, I personally believe GOD uses people as tools to help others and maybe I did make this site to help you. I am very happy that you found this site and you can repay me by spreading the word about this site to others.

as to dialysis back to back, just get a healthy meal full of proteins after your first session and plenty of rest. When I first started I had dialysis back to back too.

[Rerun]

Epoman and Life on Hold gave you the best advice.  The only thing I can add is to wear a button down shirt so they don't have to wrench on your tubes to get to them.  Best of luck.  AND siince I had to re-start dialysis after 17 years with a transplant September 2, 2005 this site has saved me so much anxiety and tears.  This site was GOD given for me!       Try the games on here.  They take your mind off everything. 

[Epoman]

Epoman and Life on Hold gave you the best advice.  The only thing I can add is to wear a button down shirt so they don't have to wrench on your tubes to get to them.  Best of luck.  AND siince I had to re-start dialysis after 17 years with a transplant September 2, 2005 this site has saved me so much anxiety and tears.  This site was GOD given for me!       Try the games on here.  They take your mind off everything. 

Wow that makes me very happy to read that. Thank you I put ALOT of hours into this site and comments like that make it all worth it. By the way Darla I sent you a PM about your request did you get it? a PM is a "Personal Message" On the top of this site you will see it says "Hey Darla you have 1 new message. (click the 1 message to goto your PM inbox).

[Bajanne]

I only realized about having a button down shirt AFTER the session.  But the nurse told me that I should do that next time.
I am starting a new post on MY FIRST DIALYSIS SESSION.

[Epoman]

I only realized about having a button down shirt AFTER the session.  But the nurse told me that I should do that next time.
I am starting a new post on MY FIRST DIALYSIS SESSION.

  awesome, I'm glad you made a new post that way your story will be easier to see for new patients to hear your experience.

[Bajanne]

Although I didn't have any cramping, a few hours later, I was feeling a little hint of cramping in my leg.  It didn't last.  I know that I was given advice which would work if I had cramping during the session or if I have someone with me.  But what I want to know is, how do you deal with cramping if you are at home, on your own?

[Epoman]

Although I didn't have any cramping, a few hours later, I was feeling a little hint of cramping in my leg.  It didn't last.  I know that I was given advice which would work if I had cramping during the session or if I have someone with me.  But what I want to know is, how do you deal with cramping if you are at home, on your own?

Why aren't you making this post in your "My First Dialysis Session" thread . Post that in your thread. I have a long answer for you. 

[survivor40272]

[sometimes it is harder to renew you life that it is to contin ue your life.  After nine years anda triple by-pass I find it becoming harder and hharder to continue.  To me finances have been my biggest problem.  I have been without transportation since March 2006.  Someone ---my wife--- has to take me to th center and a friend from the centr takes me home.  My friend it does become easier as long as you stay positive.  YOU MUST HAVE A STRONG BELIEF IN GOD and keep that belief regardless of what may arise.  I can  tell you that strong will to live goes along way.

Your first dialysis session probably will be shorter than normal-- mine was only 2 and a half hours.  You might have to stay overnight in hospital for observation-- that's what I had to do.  Your first treatment won't be very aggressive, since there's no way of knowing how much fluid/toxins you really have.  If you feel at all 'funny', TELL THE NURSE so that you don't 'crash'-- your blood pressure may drop quickly and lead to passing out.

A social worker may come to your chair with a big stack of forms to be signed-- if you don't feel up to it, tell her/him that you'd like to read everything and sign it when you're more alert, maybe before your next treatment.  The dietician will also probably visit with you with tons of info-- ask if you can take it home and read it.  (This aggravated me on my first in-center dialysis-- I was barraged with papers and forms and couldn't pay attention to any of it because I was terrified!  Everything they said to me that day had to be repeated because I couldn't remember anything.)

You might feel ill during your treatment, so it's good to have something to vomit in-- most units have large styrofoam cups for this purpose.  It's also a good idea to visit the bathroom before your treatment, since it's a big hassle to be disconnected to use it during your treatment, and whatever time you spend in the bathroom is added to your treatment.

After dalysis, you'll probably feel very tired and hungry.  Even though you won't feel like it, you should have something to eat after dialysis, because dialysis removes large amounts of protein from your blood.  After you eat, you'll probably want to take a nap.  When you wake up, you'll feel better.  The first few months of dialysis are very physically taxing, and it may be a while before you can do everything you want to do after your treatment.

Tell us how your first treatment goes... good luck! 

[Epoman]

[sometimes it is harder to renew you life that it is to contin ue your life.  After nine years anda triple by-pass I find it becoming harder and hharder to continue.  To me finances have been my biggest problem.  I have been without transportation since March 2006.  Someone ---my wife--- has to take me to th center and a friend from the centr takes me home.  My friend it does become easier as long as you stay positive.  YOU MUST HAVE A STRONG BELIEF IN GOD and keep that belief regardless of what may arise.  I can  tell you that strong will to live goes along way.

Your first dialysis session probably will be shorter than normal-- mine was only 2 and a half hours.  You might have to stay overnight in hospital for observation-- that's what I had to do.  Your first treatment won't be very aggressive, since there's no way of knowing how much fluid/toxins you really have.  If you feel at all 'funny', TELL THE NURSE so that you don't 'crash'-- your blood pressure may drop quickly and lead to passing out.

A social worker may come to your chair with a big stack of forms to be signed-- if you don't feel up to it, tell her/him that you'd like to read everything and sign it when you're more alert, maybe before your next treatment.  The dietician will also probably visit with you with tons of info-- ask if you can take it home and read it.  (This aggravated me on my first in-center dialysis-- I was barraged with papers and forms and couldn't pay attention to any of it because I was terrified!  Everything they said to me that day had to be repeated because I couldn't remember anything.)

You might feel ill during your treatment, so it's good to have something to vomit in-- most units have large styrofoam cups for this purpose.  It's also a good idea to visit the bathroom before your treatment, since it's a big hassle to be disconnected to use it during your treatment, and whatever time you spend in the bathroom is added to your treatment.

After dalysis, you'll probably feel very tired and hungry.  Even though you won't feel like it, you should have something to eat after dialysis, because dialysis removes large amounts of protein from your blood.  After you eat, you'll probably want to take a nap.  When you wake up, you'll feel better.  The first few months of dialysis are very physically taxing, and it may be a while before you can do everything you want to do after your treatment.

Tell us how your first treatment goes... good luck! 

Hello, thank you for joining however it is advisable to look at the date of the posts and had you done so you would have realized this thread is over 10 months old and the original poster has been on dialysis for a while now. Also I notice there are many spelling mistakes in your post, had you done what the main forum page says and read the "Site Rules" section first you would have double checked your post and you would have "Introduced Yourself" before jumping in and posting. And you really need to learn to use the html tags properly, if you do not know how to use them please do not.

Please see this section: http://ihatedialysis.com/forum/index.php?board=34.0 Then please go to this section: http://ihatedialysis.com/forum/index.php?board=14.0

Due to age of this thread this thread is now LOCKED - Epoman. Admin/Owner